My Great Strides Story
Hi, friends and family!
This marks the 12th year of doing the Great Strides walk to find a cure for Cystic Fibrosis. Last year we had a humble and amazing turnout again despite the rain and indoor parking garage surroundings. We truly had an encouraging and uplifting time. We are so blessed in amazing and wonderful ways by our friends and family that come alongside us in this fight for our girl's life and breath year after year. THANK YOU!
Rachel’s lungs are in a holding pattern currently. She has struggled with her lung function being lower than the doctor's would like all year. We have worked hard, but those numbers just haven't budged. In June we found out that she cultured a yuckier cf bacteria called MAC. After many tears (as any new bacteria seems to bring, let alone a more dangerous one), our doctors are awaiting more information before they move forward with a difficult treatment plan. She spends around two hours daily with her treatment regiment (when healthy) trying to keep cf at bay.
There still is no cure for this devastating disease. So we continue to pray! And, we ask that others would join us in this fight to raise money to buy this vital research. We are really getting close to a working "cure" (management) for this disease. While the medications like Orakambi (the one she trialed), and Symedeko (one that she will start any day now) offer hope of slowing down the progression of cf. There are reports that by 2020 there will be an incredible therapy available to help actually TREAT Rachel (and over 90% of those with CF)! That is AWESOME!! That is just 2 short years away. BUT...CFF needs money to stay on track to further develop and complete these clinical trials. We pray that Rachel's lungs will be healthy enough so that she can greatly benefit from these new therapies when they get to her. Knowing that one illness or bacteria could jeopardize that, is a fearful thing. But we press on with faith and hope in the Lord that her future WILL SOON BE DIFFERENT!
Will you be part of that hope? Will you be part of our team and that difference for the future?
**Rachel's Raise of Hope team will be walking on May 19th, 2018 for the Great Strides event. It is a fun, family-friendly event that raises awareness and support for people with CF and their families. Your presence there is a true blessing.
Distance: 1.5 Miles
Chapter: Nebraska - Omaha
Event Location: Aksarben Village - Stinson Park,
**If you can not come to the walk, another way that you can support us is by making a donation to our efforts. This money makes a difference for life! It is helping add tomorrows to Rachel's life and the lives of 70,000 worldwide living with cystic fibrosis.
**We will also be selling Rachel’s Raise of Hope shirts again this year (finishing up the design this week hopefully).
Please support Rachel by making a donation to our Great Strides fundraising campaign today!
Blessings and care~
Rachel and family
~Your gift is 100-percent tax deductible.
Here is the link for 2018 Rachel's Raise of Hope tshirts: https://docs.google.com/forms/d/e/1FAIpQLSdP7DXQELMBQGdnjc92Wg25GwyPuWCH32Fxs2-8A0N6moJTVA/viewform?usp=sf_link
**Update Longer version of Rachel's 2017 CF journey.
Rachel will be thirteen this year. She is growing into a fine young lady. She has a beautiful smile that continues to light up the world around her. She continues to aim at being active, knowing that it is the wellspring of her health, life and future. Dancing has been a good choice as gymnastics was a little tricky with the addition of the feeding tube pulling on gymnastic bars and some of the moves for her. She is having fun with the Hip-Hop routines. Rachel is also learning to enjoy working out. God has orchestrated some events that have lead to a precious trainer working with her (and all of us girls) as well as getting to go to the gym a couple of times a week to swim and work out. Each one of these activities have been a blessing.
Rachel recently finished her two year trial on the new drug, Orkambi. It was approved for patients with CF who were 6-12. Despite the somewhat arduous process of participating in a trial (complete with lots of pokes and tests), it was an amazing experience and one that Rachel is pretty proud of the part she played. Not often do you get to "finish" anything with cf. There are always more treatments, forever more mediations, and so many times more work... so to have a FINISHED something cf related was an unexpected blessing.
This has been an incredible year for Rachel with many intense high’s and low’s as is normal with preteens, (only cf magnifies it quite a bit). Since adding the feeding tube Rachel has gained nearly 30 pounds!! YES, THIRTY POUNDS!!! She has also grown nearly 4 inches this year and for a child that has had a particularly difficult time growing this is HUGE!!! The feeding tube has definitely taken some pressure off of her and despite the pain (still struggling at healing and issues related to the tube itself) Rachel has enjoyed the victory of watching herself grow.
Despite the trial going well, and new medications being approved that will improve her health and life, this has honestly been her toughest year yet. She is at an age that she is full aware of the hard things that cf brings into her life. Rachel received her feeding tube surgery in April. Amazingly, this was her first hospitalization for CF that she could remember. CF has thrown some pretty difficult things at her, but this by far was the hardest emotionally, mentally and physically. She struggled with intense pain of the actual surgery (having a previous, large abdominal surgery with a lot of scar tissue was thought to be the cause). During this stay there was one point where I felt CF KNOCKED HER DOWN. I encouraged. I pleaded. I desperately urged my child to get up from her hospital bed. I recognized that no amount of walking beside her made this any easier. She was the one that had to cough through excruciatingly painful treatments. She was the one who had to will herself to move. Somehow I understood in that moment that I was passing an invisible cf batten. No longer was it I that was carrying the lionshare of this disease, but rather Rachel. She was being forced to face the monster of CF from within! This was a painful to watch. The harsh reality that age, awareness, time, and or a sickness has the ability to change this disease in a blink of an eye. But...through this year Rachel has fought for a depth of strength, courage and fearlessness within to face the monster of cf. Observing this last years' experiences has been both heartwrenching and awe-inspiring. Rachel has been scared, defeated, worn down, and battle weary many times...but she has risen time and again from it to win this small victory. The knowledge that she has been incredibly blessed to have been as well as she has been, when so many others have not been, is humbling. It is raw at times to be part of a community of people that struggle to breathe everyday. To watch others do their best, battle well, but still die from cf (some younger that Rachel) is crushing. BUT...we have HOPE!!! Please consider being part of our TEAM of people committed to making a difference in Rachel's life, breath and future!